Gluten need advice

Have you had a fast then Gloucestershire tolerance test.

These might be ideas alongside the Coeliac testing.. pls do NOT just rely on the blood test for Coeliac as it can be unreliable. .ask for the Gut Biopsy....

Just ideas...

I sincerely hope you start to feel better and get results. ..Have u tried Symptom Checker Online?? X

I don't have celiac as I had a normal intestinal biopsy. But I did have a litany of strange and apparently unrelated symptoms before I went off gluten. Gluten intolerance can produce the same problems as celiac, but it takes longer to get that bad, is how it seems to me.

I had pain in most of my joints, muscle weakness such that I couldn't lift a bowl over my head with one arm to put it on the top shelf, nausea, diarrhea, sometimes extremely painful bloating such that I couldn't breathe normally, periodic vomiting, daily headaches too severe to be treated with OTC pain killers, gas and bloating all the time, audible stomach rumblings such that they distracted other people in the same room with me, fatigue, much worsened depression and anxiety symptoms (at first I thought it was a downturn in an existent depression), mental fogginess which is almost gone since going off gluten, greatly worsened acne, extremely oily skin, little blister-like sores in my mouth, dizziness, and I think that about covers it.

The intestinal distress, abdomenal pain and periodic vomiting either cleared up or greatly diminished in the first week of being gluten free. I likely have IBS, though, as I still get some upset, gas, acid reflux and diarrhea. I can live with that, though, the rest was intolerable. The other symptoms cleared up in the following months with some taking a very long time to disappear. I believe my emergent gluten intolerance prolonged my already existing depression for a few years when I could have gotten better. The depressive symptoms lifted slowly, but the joint pain, weakness and heavy fatigue was gone in four to six months.

Going off gluten was life changing for me, but tests would not have found it. I don't have celiac, and so I don't have the antibodies, neither were my intestines showing serious damage. It was a good and lucky guess that came to me after some research, and I am grateful to have found the answer. There is no test for gluten intolerance except to exclude gluten from your diet for a month and see what happens. It's been more than a year that I am gluten free, and I am still seeing more subtle changes as my body returns to health.

Anyway, look into a new doctor. Mine was wonderful and helped me work successfully through the gluten intolerance hypothesis even after the ttg came back negative. You need someone who listens to you, takes you seriously and cares about your health.

It snuck up on me quite gradually such that it became normal before it became absolutely intolerable. I'd probably have wound up killing myself, what with already being depressed, if I hadn't figured it out when I did. It was really that horrible towards the end.

I used to think gluten free was the stupidest fad, ever, too. But nope. There is something real going on with with so many people developing it in recent years, though I still think it is exagerated to sell books I was not intolerant all my life, either. It just popped up in my 30s, apparently out of nowhere. I ate a lot of whole grains, too, especially wheat, so when I got sick, I got really sick.

Anyway, hope some of that helps. Good luck to you

All those symptoms can be caused by all sorts of things so sometimes you can be led certain ways depending on what you read. I think that's why GPs are often at a loss as to how to help and why we can often feel we're not being listened to/helped. I take it you have had standard blood tests too? 

The symptoms you decribe are extrmely similar to what I had last year. I am 36 and had no previous health problems- other than IBS and generally not a great immune system but over the past 2 years I've just gradually got one weird symptom after another until it all came to a horrible head last September where I was barely able to function. I genuinely thought I was dying. I was tested for a variety of things, including the coeliac blood test however, I had not been eating much gluten before this (about 50% of the time) so I suspect it wouldn't have shown much plus that test isn't 100% reliable. After those tests showed nothing, the GPs were at the end of their route of enquirey and I was told to come back in a month if symptoms persisted. After reading around, I decided to see if a gluten free diet would help- just as a 6 week experiement. Well, those 6 weeks turned into 8 months as it literally turned my life around and I did not want to go back to feeling that ill. (I shoudl say I have also cut out dairy as after going gluten free, I started getting some extreme gas and intense pain after dairy)

After a few months of quite miraculous changes (literally, no symptoms at all!), I went back to my GP to show them and asked to be referred to gastro as I wanted tested properly for coeliacs- my reasoning was that gluten/lactose intollerance is something I can manage on my own and can find my own thershold but coeliacs carries other health implications and it's a 100% infelxible diet so I needed to know. They did this and after a 6 month wait time, I met with the gastroentologist last week. Thankfully, they were brilliant and I'm getting tested for everything (crohns, lactose intollerance, coeliacs as well as other things I couldn't quite pick up). I felt very well cared for and that I was being taken seriously. Unfortunately, I will have to go back onto a gluten diet for the coeliac test, which I am dreading but at least I know it's time limited. 

If you're really getting nowhere with the GP and you really feel gluten is the cause, then a very strict gluten free diet (it has to be 100% or you're not going to find anything out) will give you the answer and can then give you some 'evidence' to take to your GP to get some further tests done. 

That said, 'gluten intollerance' can't be tested for but can cause all these symptoms so, you may never get a diagnosis as such but you may get a cure, and desptite the annoyance and frustration of a gluten free diet, it's a million times better than the gluten symptoms! 

I really hope you get to the bottom of things and find something that will get rid of your symptoms! 

I have to applaud you for sticking to your guns,  you know when your body is not right!  BetterBetty your symptoms are similar to mine but my blisters tend to be on my limbs and Torso,  my worse symptom is the tummy pain.  In January last year my gallbladder was removed,  after years of pain and being diagnosed with IBS, Kidney colic etc they scanned the gallbladder which was a mess with masses in it.  This seemed to make my symptoms go through the roof being hospitalised many times for the pain and vomitting.  

I went for my appointment this week expecting to be released as the MRCP showed i had no stones in the bile duct (initially after the op there was) .  Turns out they are not releasing me as I have lost 25% of body weight since November, I think that is an exaggeration.  

So now testing for Ceoliac and thyroid!  The tummy pain seems to radiate from the lower right rib down to right hip and across to left kidney and pelvis. 

Does any of this sound familiar?  

I also have sinus problems and migraines!

Have you got your results yet? 

After they finish testing I am thinking of doing an elimination diet anyway! 

Hope your all having a good day 😄